rockytop

My child tried riluzole for a short time and I feel like it was helpful, or at least would have been. She began to refuse medication, so it was not used longer than a week or so. If she agrees to restart medicine- this would be among the first ones I would encourage. I was not aware of the other potential sources of glutamate blockers. Interesting. Our insurance covered Riluzole, thankfully.

if you can drive to Bethesda, Dr L is a great neurologist! and pandas, too!

I would start with-- 1. Sure sounds like PANDAS to me! 2. Do you live near a PANDAS doc? Having dealt with this for 2 girls, one very very sick and one pretty bad (though much better post pex & IVIG!-YAY!) I honestly would head straight to a PANDAS doc. I would not waste time, money or your sanity! Easy for me to say-- I live quite close to one.

Can you video the behaviors?

Yes, he did test for IgG titers. I will ask about PCR testing, I think that is what you are referring to, right? she was very ill with skin manifestations and developed a hemolytic anemia and severe abdominal pain 2 days post IVIg. So they were checking for all sorts of things! Thanks for your help.

My child has had some borderline positive results for certain infectious labs since she was sick post IVIG last week. I have found some reliable info on a child with false positive hepatitis post IVIg for Kawasaki disease-- false positive cleared and remained clear at 6, 9 & 12 months. My doctor is watching my daughter's symptoms and we will recheck labs in a few weeks, unless she becomes ill again. Anyone have any experience regarding this?

I would be suspicious of the TS diagnosis- I have 2 with PANDAS & a third with year-plus of incessant vocal tics that cleared with a month of steroids and zithromax. That child would proabably have been diagnosed with Tourette's disorder, had we not known about PANDAS and had a PANDAS doc not given us the steroids & abx. She has been tic free for 4 months!

THERE IS A "CODE" for PANDAS? That is news, I think- It might be worth it to go to your doc (out-of-network// out-of-pocket) & file with the CORRECT, TRUTHFUL code (post-inf encephalitis); then file and get reimbursed. We are doing that this week. You have got to do something soon- don't let PANDAS get ahead of you! it sounds like it maybe already & time sometimes can be our enemy in this. Will your ins co pay for pex? That helped one of my daughters immensely, but it did not last at 100%, unfortunately.

Wilma, I am too tired and mind numb to say anything useful right now- except I have had no real luck with any psych doc (even one who believes in PANDAS)- they really cannot do much. Risperdal did help my child, I think I remember it did not hellp yours-- but really, they need medical treamtent and all psych meds can do (in my opinion) is calm them enough to get it. The only one who has really been helpful to us is Dr L. Have not seen any of the others. can you remind us how old she is? Is she supposed to get IVIg soon? Did you keep up the steroids? i know this is a nightmare. hang in there.

without the internet-- probably 90% of us would never had heard of PANDAS! please have her check out GAD auto-immunity. I hope some day some factor is found that creates this auto-immune "perfect storm" that creates so much suffering in so many different ways. oh and then---- A CURE FOR IT!!!

I would suggest checking out GAD autoimmunity. It causes a problem that would attack the pancreas, causing type 1 diabetes, however, it also has been seen to cause neurologic and psychiatric problems. Check out this article (some one on here posted it recently also, I think) http://www.forbes.com/2010/01/12/autoimmune-disease-hallucinations-lifestyle-health-medical-mystery.html it is called the girl who lost her mind. My very sick child will hopefully be tested for this very soon! Please print this article and have your cousin pursue it! I hope she kind can find out what has caused these problems for her child.

PhillyPa has good advice for you-- stick it out. either it works or it will not-- but you will not know unless you try. My daughter is as sick as yours-- I know how it is going for you now. hang in there wilma, I am so sorry for her and you. praying for you both

I have a shot this week at possibly getting my child treated. This will be a one-shot deal & I am wondering if anyone knows any benefit to asking our doctor to run IV steroids before the IVIg. I have no idea if this is desirable or even possible, but I want anything and everything done while we have the chance. After this our next stop will most likely be sitting on the Dr Leckman or Swedo's front steps (just kidding:)or begging to be the first DBS for pediatric OCD. things are terrible, terrible, terrible, but she admitted tonight that the way she is living is no way to live and she needs help. If that will translate to cooperation, I do not know. Please, any thoughts on my steroid// IVIg idea? I just want to give her every chance at recovery I can. She is no meds now and reacted quite well to prednisone a year ago.

I am still hopeful for her, Wilma. We saw NO improvment whatsoever until 10 days to 2 weeks.

sending you a PM! We have not seen Dr Singer, but did go for an evaluation at JHU in Jan 2010.